Working with ME/CFS – Examples of Workplace Adjustments

pippa sat on bed, wearing comfy clothes, with laptop propped up on her crossed legs. pippa has long brown hair down and is smiling

Before we jump into this post, it feels really important to emphasise that by no means is everybody with ME/CFS is well enough to pursue employment, nor should they be expected to. I also know first-hand just how difficult it can be to find accessible employment opportunities in the first place.

However, as one of the self-named in-betweeners living with the challenges of a debilitating chronic illness whilst trying to lead an independent and fulfilling life, I think it’s important that we share as much information on this topic as we possibly can. For a bit of background, you can read more about my personal experiences with employment and becoming a chronically ill freelancer here!

If you’re new to the world of employment, or you’re returning to work after a period of ill health, you might find it helpful to know your rights as a chronically ill employee – namely, the workplace adjustments (often referred to as ‘reasonable adjustments’) you’re entitled to. In a nutshell, reasonable adjustments are modifications designed to overcome the challenges that disabled employees face. If you have ME/CFS, your employer is obligated to make reasonable adjustments under the 2010 Equality Act.

Some workplace adjustments are common and well-implemented; people know to ask for them and employers know how to accommodate them. However, with a complex condition like ME/CFS, there may well be additional changes and adaptations that could benefit your wellbeing in the workplace – and many people simply don’t know that they have a right to ask for them. In this post, I’ve listed as many of these reasonable adjustments as I can think of, in the hope that they’ll help you to think about your own unique needs and how to discuss them with your employer.

View Post

Redefining Success As A Disabled Person – TEDx 2019

pippa sat on edge of stage at TEDx, iconic red carpet and lettering in background. Pippa is wearing a burgandy long sleeved top, black jeans and black pumps.

In December 2019, I took on one of the most nerve-wracking challenges of my life and gave a TEDx talk in York. You can watch the talk on YouTube, and below you’ll find a blog post equivalent of what I wanted to say… all about redefining success as a disabled person. I really hope it gives you some food for thought!

So, I’m the kind of disabled person you don’t see in the media. I haven’t climbed a mountain, I haven’t defied the odds and become a medical miracle, and I have no plans whatsoever to compete in the Paralympics.

Instead, I was lucky enough to acquire a debilitating chronic illness as a teenager. It took five years to find my diagnosis, and even then I was left with no prognosis, no targeted treatment, and no cure. In fact, all I had back then was just a handful of leaflets, some prescription painkillers, and a questionably wobbly wheelchair who I proudly named George Ezra.

I had to recalibrate my entire young adult life to accommodate my illness and really, this is where the trouble first began.

View Post

Becoming A Chronically Ill Freelancer – My Story So Far

pippa sat at desk wearing stripy shirt and silver noise cancelling headphones, writing in a diary with open laptop in front of her and books in the background

Time and time again, people ask what I actually do for a living… and I’m yet to find a concise way of answering this question. If they’re familiar with my online life, I’ll tell them I’m a writer and a blogger. If they’re aware of my health situation, I’ll tell them I work from home in digital communications. If it’s somebody I don’t know well, I’ll simply tell them I work in the charity sector. And all of these answers are true.

My Background

I graduated from university in 2016 (finishing my postgraduate diploma in 2017), and thanks to the joys of an unrelenting chronic illness, I had no idea what the future would hold. As I discuss in more depth in this post about being an ‘in-betweener’, I knew I was well enough to work in some capacity, but far from able to pursue a typical 9am-5pm occupation that involved leaving the house and being around other people every day.

Still adapting to the constraints that my health had imposed on my day-to-day life, back then I didn’t think I would have the luxury of choice over what job I went into; I thought I’d simply have to take whatever I could secure. By then, my self-worth had taken a serious battering. Everything had been overshadowed by my condition and the struggles of navigating an inaccessible society, and I was yet to realise that I still had all these valuable skills to offer.

View Post